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Outline The Backstory o Why this topic? The Science o What does the literature say? The Field o What is happening at other pediatric CF centers? o What is happening at AFCH? The Next Step o Where do we go from here?

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The Science Physical Training for Cystic Fibrosis (Review), 2011 o Cochrane Cystic Fibrosis and Genetic Disorders Group Purpose: o “To determine whether a prescribed regimen of physical training produces improvement or prevents deterioration in physiological and clinical outcomes in cystic fibrosis compared to no training.” Conclusions: o “…are limited by the small size, short duration and incomplete reporting of most of the studies included in this review.” o “Physical training is already part of the care package offered to most people with cystic fibrosis and there is a lack of evidence to actively discourage this.”

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Interview Questions 1.Which provider(s) discuss exercise in your clinic? 2.Do you have handouts that patients take home? 3.Do your providers receive additional training in exercise prescription for CF patients? 4.On what exercise-related topic do CF patients most often need more information? 5.Do you have any other tips that would be helpful for us to know?

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Canada Exercise promotion tips: o Find out what they enjoy doing best Teenage boys: add cardio to weight lifting Teenage girls: “are the worst” - start early to make exercise a habit o Inpatient: Wii and other computer games for exercise o Get the whole family involved in outdoor activity

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Green Bay Tammy Summers, RD o “While we encourage physical activity (sports or play), I can't say that we really have a formalized process.” o “Our respiratory therapist is trying to set up inpatient/outpatient cardiopulmonary rehabilitation and putting together a more formalized exercise regimen since that really seemed to be the buzz at NACFC”

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Marshfield Tammi Timler, RD o “Our respiratory therapists see patients at each visit and discuss exercise.” Karen Masanz, RT o “If a patient wants to replace their AC for exercise they need to do 1 hour of aerobic exercise for each treatment.” o “We talk about walking, sports, weights, whatever they like. We discuss how it helps them to take deeper breaths and keeps the secretions moving. We have no set protocol that we use.”

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La Crosse Margie Ley, RD o “I haven't been focusing on this other than to encourage our patients to be active, but nothing specific.” o “The only thing we are doing is that our respiratory therapist has an incentive game she plays with the younger kids. Other than that no one is really taking ownership with this.” o “We all agree we need to do more and will be interested in your ideas.”

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Milwaukee Tami Miller, RD o Children – “most are active in organized sports or are playing outside, so I'm not as assertive in promoting scheduled exercise.” o Older the teens and young adults - “our adult CF doctor and I are most likely to discuss exercise in a directed conversation, especially when we feel that the patient is playing video games a lot and has decreased lung function.” o “I think the balance between good nutritional status and exercise are well connected, but I don't feel particularly skilled in guiding specific exercises or activity other than in general terms.”